Palliative Care Connect

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Pilot Evaluation Summary

October 2023 – February 2026

2,023 people supported

1,363 episodes of care

Palliative Care Connect (PCC) was a Commonwealth-funded pilot operating in South Australia from October 2023, with delivery extended through to June 2026. It was established to address long-standing gaps in how people with life-limiting illness, their families, carers, and the professionals supporting them navigate palliative and end-of-life care across fragmented health, aged care and community systems.

The Palliative Care Connect Statewide Navigation Service continues its operations in 2026–27. Anyone needing palliative care support can still call 1800 725 548 (PALLI8), email health.pcnavigation@sa.gov.au, or visit palliativecareconnect.com.au.

PCC at a glance

Providing information and links to palliative care and bereavement support across South Australia.

All figures cover October 2023 to February 2026. The PCC Statewide Navigation Service launched in October 2023; the other services launched in March 2024.

2,023

people supported

1,363

episodes of care

Palliative Care Connect Statewide Navigation Service

931

episodes of care

average of 32 per month

Bereavement Navigation Service

263

episodes of care

average of 11.4 per month

PCC Website

47,985

total users

average of 1,919 per month

97,369

total views

average 3,895 per month

Palliative Care Connect Regional Navigation Service

119

episodes of care

average of 7.9 per month

Palliative Care Connect Aboriginal Navigation Service

50

episodes of care

average of 2.2 per month

HELP app

113

active Networks

average 7.2 new networks per month

Palliative Care Volunteering SA service

600

enquiries received

486

from individuals

114

from organisations

Bereavement groups and individual bereavement counselling

156

people supported

Bereavement counselling:

63

people supported

Bereavement groups:

93

people supported

About the evaluation

Clear Horizon used a two-pronged approach to evaluate the PCC pilot, combining a developmental evaluation that supported real-time learning and adaptation with a pilot evaluation that assessed the pilot's effectiveness, coherence and impact. The two streams were designed to reinforce one another. Insights from the developmental evaluation's Learning Loops informed the pilot evaluation, while findings from the pilot evaluation fed back into ongoing learning and adaptation during delivery.

Developmental evaluation

A way of supporting innovation and learning as it happens. Rather than waiting until the end of a program to assess what worked, it gathers data and reflection throughout delivery, helping teams test ideas, see what is and isn't working, and adapt. It suits complex, evolving pilots where the model is still being refined. For PCC, this ran as a series of Learning Loops, repeatable cycles of data collection and facilitated reflection that fed insights back into the services during the pilot.

Pilot evaluation

A structured assessment of the pilot's overall effectiveness, coherence between services, and impact, using a theory-based approach. Rather than only measuring outcomes, theory-based evaluation asks how and why change happens, testing whether the conditions and mechanisms expected to produce change are present and working as intended. PCC's Theory of Change provided the framework against which the findings were assessed.

What Palliative Care Connect delivered

PCC was a suite of services providing information and links to palliative care and bereavement support for people with a life-limiting illness, their families and carers, and the professionals supporting them.

At the core of every service was navigation, the trusted and time-limited help people need to understand a complex system and reach the right support at the right moment. Without it, that complexity becomes a barrier to care in itself. The box below sets out why PCC was needed.

The palliative care system is complex, spanning health, aged care, and community sectors. For people encountering it at the moment of a diagnosis, deterioration, or bereavement, understanding what is available and how to access it can be genuinely difficult. In practice, a referral often means being provided with details at the end of a consultation, with the expectation that the person or family will follow up. For people managing a diagnosis, deterioration, or bereavement, that follow-through is not always possible. Palliative care is also widely misunderstood as being only for the final stages of life, which delays engagement and limits earlier planning, symptom management, and psychosocial support.

Some populations face greater barriers than others. People in regional and remote South Australia have fewer palliative care options locally and must either travel to access support or receive more limited care close to home. First Nations people access specialist palliative care at around half the rate of the broader population nationally, reflecting both limited availability of culturally safe services and approaches to dying that carry deep cultural meaning and do not fit neatly within standard service models. People with non-cancer conditions or disability encounter less visible pathways into care. Families without prior experience of the system carry a heavier navigation burden at precisely the moment it is hardest to do so.

Within aged care, where many people now spend their final months, capability to provide end-of-life care is not consistently embedded.

This contributes to transfers between aged care and hospital settings that do not always reflect people's wishes. General practitioners, who are central to a quality aged care network, often do not have the availability required to provide sustained end-of-life support. The result is a system that functions, but unevenly, and that leaves too much of the coordination burden with families and individuals navigating it during crisis.

Navigation cannot resolve workforce shortages or the underlying capacity constraints that produce these gaps. What it can do is support earlier planning, improve coordination between services, and help people and providers identify appropriate alternatives when specialist palliative care is not the right fit. This is the gap PCC was established to address.

Move through each service to see what it did and what it achieved.

Centralised telephone-based navigation, information and service linkages for individuals, carers and professionals seeking guidance on palliative care and related supports across South Australia. Most contact was a single conversation at a point of uncertainty.

Over the pilot the service grew into a connector across the wider end-of-life system, supporting hospital teams, aged care providers and GPs alongside individuals and families.

“When I got off the phone… a weight had been lifted off my shoulder.”

— Service user

Service user satisfaction rating 9.9/10
Rating of service increasing understanding of palliative care 9.5/10
236 episodes delivered to or initiated by professionals
Empowerment the most common recorded outcome (58% of cases)
55.5% of contacts during the stable phase; 30.7% during the deteriorating phase

Why people made contact

Bereavement navigation and referral support through a statewide telephone service, with face-to-face support in selected locations including Adelaide, Whyalla, Port Augusta, the Riverland and Limestone Coast.

Support usually unfolded over weeks or months rather than a single call. It combined information, referral and emotional support, and integrated short-term counselling for people at low to moderate risk so they could get both counselling and navigation through one familiar relationship, without retelling their story.

“I would have had less resources, and would have been coping less, and I would be carrying the dark heavy weight of the grief.”

— Service user

Service user satisfaction rating 9.6/10
Rating of service increasing understanding of bereavement 9.4/10
77% of users referred to bereavement support; 14% to bereavement groups
Grief Literacy Workshops: 45 workshops reaching more than 660 participants
Integrated counselling: 40 episodes since late 2025; navigators recorded prevention of extended GP or professional time in the majority of cases

Top recorded outcomes

Culturally safe navigation and support tailored to the needs of Aboriginal and Torres Strait Islander people and communities, primarily via telephone and face-to-face in Port Augusta and Whyalla. The service was relationship-first and grounded in cultural safety.

Navigators built trust over multiple visits, often four or five, before deeper conversations about care and end-of-life planning became possible. This was a fundamental aspect of the model, not a limitation. Its place-based delivery reached communities a metropolitan-only service would not.

Yarning Together

In Port Augusta the service developed “Yarning Together for Decision-making” with the local hospital and renal unit: informal sessions grounded in clinical yarning principles that build connection and trust before any information-giving, particularly for Aboriginal people living with chronic kidney disease.

“What works well here is different to Ceduna… there’s not a one-size-fits-all aspect of it.”

— PCC Aboriginal Navigation Service staff

Empowerment and informed decision-making recorded in 89% of cases
Improved care coordination: 39% of cases; advance care planning: 39%
Support to advocate for patient preferences: 54% of contacts; end-of-life planning: 54%; cultural or spiritual needs: 44%
93.8% of users in outer regional communities, consistent with place-based design

Figures are from case records (n=50) and should be read as recorded rates, not precise population estimates.

Place-based navigation for people living in the Yorke Peninsula, Barossa and surrounding regions, connecting them with palliative care and local supports. As a regionally embedded service, it extended PCC’s reach into parts of the state a metropolitan-based model could not cover on its own.

This service concluded in June 2025, at the end of Phase 1, when delivery was streamlined.

Reached people primarily in outer regional (65.8%) and inner regional (30.8%) areas, as intended
Coverage concentrated across the Yorke Peninsula and surrounding areas

A digital tool designed to coordinate informal social and practical support networks for people with life-limiting conditions, reducing carer burden and strengthening community-based support. A person set up a network around someone who is unwell so family and friends could see and share the practical and social tasks of caring, an approach called network-centred care.

Legacy

With Pangula Mannamurna, an Aboriginal health service covering communities from Keith to Mount Gambier, the team co-created a paper-based version of the network-centred-care resource for communities where digital tools are a barrier. It is designed to be nationally applicable.

263 participants across the networks; 1,011 tasks coordinated

Support types when networks were set up

An online hub providing information, resources and an interactive directory to help people access relevant support. It tended to reach people at an uncertain point: among those who completed the self-referral form, 53% said they understood what palliative care is, but only 25% knew how to seek a referral in South Australia.

Who was visiting (pop-up survey, n=78): 29 carers and family members · 24 professionals · 9 bereaved people · 5 patients · 5 friends or community members

64% of users surveyed found the information useful (27% unsure, 9% not useful)

Top needs among people self-referring

Strengthened volunteer involvement in palliative care through training, resource development and organisational support. It built the Palliative Care Volunteering Hub, a public online directory so health professionals can find volunteer support for clients and individuals can find opportunities to volunteer.

18 new partnerships established
24 training sessions delivered to 310 participants
Over 90% of survey respondents said training increased their understanding of palliative care volunteering
17 volunteer stories produced to address a key recruitment barrier (the role is widely misunderstood)
5 volunteer coordinator network meetings supporting shared learning across the sector

Structured group sessions and individual counselling to help people cope with grief and build social connection through shared experience. This support sat alongside the navigation services, providing bereaved people with a direct route into counselling and peer support. It was a safe, shared space to process grief.

Women made up around 79% of those accessing individual counselling and around 74% of group participants, consistent with research that men are less likely to seek bereavement support

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Reach and access

PCC services were accessible through a range of entry points, allowing individuals, families, carers and professionals to engage in different ways. In practice, access to navigation services occurred through self discovery, meaning individuals or family members contacting PCC on their own initiative. This occurred primarily via telephone, alongside referrals from health and community providers. Digital platforms such as the PCC website and HELP app, as well as engagement through community and volunteer networks, supported awareness of and connection to PCC.

Who contacted the service

PCC Statewide Navigation Service: percentage by contact type. Source: PCC case data.

How did users hear of PCC?

PCC Statewide Navigation Service: percentage by referral source. Source: PCC case data.

PCC Website

Between February 2024 and February 2026, the PCC website recorded 47,985 users, averaging just under 2,000 per month. Traffic peaked during the marketing campaigns, rising to 6,397 users in June 2024 and 9,521 in July 2025, before returning to a lower but consistent baseline. Data from 87 users who completed the website’s self-referral form points to the profile of need among people actively seeking support. While 53% reported understanding what palliative care is and how it can help, only 25% said they knew how to seek a referral to palliative care in SA, suggesting the website was reaching people at an uncertain point in their journey.

Palliative Care Volunteering South Australia

As part of the Palliative Care Volunteering SA project, the Palliative Care Volunteering Hub was developed as a publicly accessible online directory of palliative care volunteer organisations. The directory serves a dual purpose: health professionals can use it to identify volunteer support options for clients, and individuals can use it to find opportunities to volunteer. Alongside the directory, the service produced 17 volunteer stories designed to help prospective volunteers understand what palliative care volunteering involves in practice, addressing one of the key barriers to recruitment, that the nature and emotional demands of the role are widely misunderstood.

HELP App

The HELP app provided a distinct digital pathway for coordinating informal care networks, referred to as network centred care. Between February 2024 and February 2026, 113 support networks were created across South Australia, involving 263 participants and generating 1,011 tasks. The types of support most commonly nominated at sign-up included family and social connection (46% of networks), food and home support (42% of networks), and health and personal care (39% of networks), alongside end-of-life planning (30% of networks), grief and funeral support (17% of networks), and pet care (13%). This breadth reflects the wide range of practical and social needs that informal care networks organise around.

In response to initially low engagement, the Bereavement Navigation Service introduced Grief Literacy Workshops to build understanding of grief and strengthen relationships with potential referral partners across health, community and social service sectors. Up to February 2026, the service delivered 45 workshops and education sessions to metropolitan and regional services across South Australia, reaching more than 660 participants from hospitals, palliative care, aged care, mental health, community, and government organisations, including services supporting multicultural and Aboriginal and Torres Strait Islander communities. These workshops served both as an education tool and relationship-building mechanism: as participants gained confidence in recognising grief and understanding referral options, they become more likely to refer people in a timely and appropriate way.

One concrete example is the emerging relationship with Medicare Mental Health provider NEAMI Head to Health, a mental health referral service. Staff described that the workshops improved their ability to identify when grief was a primary concern and gave them confidence that individuals would be “looked after” by the Bereavement Navigation Service. This illustrates how capability-building went beyond awareness-raising, helping to embed the service within existing referral pathways. Strengthening these pathways proved critical for a service model that relies on other providers to identify and refer people experiencing grief.

Quality and trust

Once engaged with PCC, people consistently described support that was clear, unhurried, and adapted to their circumstances. They described navigators as knowledgeable, patient, empathetic, and direct, and reported leaving interactions feeling clearer about their situation and more capable of taking next steps.

Service user satisfaction

Statewide Navigation Service

Bereavement Navigation Service

Rated by service users on a scale of 1 to 10.

“I found courage and strength from it and I was able to open up… I felt comfortable and brave enough to disclose.”

— Bereavement Navigation Service user
“What works well here is different to Ceduna… there’s not a one-size-fits-all aspect of it.”

— PCC Aboriginal Navigation Service staff
“When I got off the phone… a weight had been lifted off my shoulder.”

— PCC Statewide Navigation Service user

Navigators drew on multidisciplinary professional backgrounds spanning nursing, social work, counselling, and related fields. This breadth enabled them to respond across health, emotional, and social domains within a single interaction, rather than treating these as separate concerns. Internal consultation processes, in which navigators sought input from colleagues before providing uncertain or complex information, reinforced the accuracy and credibility of what people received. The result was support that people described as deep system knowledge, rather than following a script.

When people trust a navigator, they disclose information they have not shared elsewhere. They articulate fears they have kept to themselves, raise questions they were reluctant to ask clinicians, and consider supports they had previously declined. They engage more confidently in decisions about their own care or the care of someone close to them. Family members and carers who do require sustained support often return to the same navigator across weeks or months, even after being connected to other professionals, because the relationship itself becomes a source of orientation.

For the PCC Aboriginal Navigation Service, trust was not established in a single interaction. It was built through sustained presence, cultural safety, and the willingness to move at the pace set by the person or family. Navigators reported needing four or five visits before deeper conversations about end-of-life planning could occur. This was not a limitation of the model; it was the model. The time required to work this way was not optional.

Outcomes for people

In line with the pilot's Theory of Change, the evidence indicates that PCC is contributing to meaningful change for the people who access it, as outlined below:

People access the services and supports they need

PCC helped people reach services they would not have found, reached, or persisted with on their own. It provided clear guidance for some, and active enablement for others such as making referrals, following up with providers, supporting handovers, and stepping in when the system stalled. Across all services, people described faster access when it mattered most with practical supports often arranged within 24 hours, referrals made sooner, coordination improved, and families spending less time holding the system together themselves.

"That support was initiated by Palliative Care Connect and without making that contact, that support wouldn't have happened."

— PCC-SNS service user

People have the information they need

People described PCC information as clear, relevant, and tailored to exactly what they were trying to work out, often reshaping their understanding of palliative care itself. Users came to understand that it can be accessed earlier than expected, that it supports carers as well as patients, and that it offers far more than end-of-life care alone. Users rated PCC's contribution to their understanding at 9.5 out of 10 for the Statewide service and 9.4 for the Bereavement service, and feeling empowered to make informed decisions was the single most frequently recorded outcome across every navigation service.

"[Had I not contacted the Bereavement Navigation Service] I would have had less resources, and would have been coping less, and I would be carrying [around] the dark heavy weight of the grief."

— BNS user

People are connected and less alone

People described PCC contact as a moment of being heard and understood and for carers and family members especially, a space to think through complex situations without judgement. Many left interactions feeling calmer, lighter, and better able to cope even when the practical circumstances were unchanged. For people reaching out during a diagnosis, deterioration, or early grief, that emotional containment was often what made the next step possible.

"When I got off the phone… a weight had been lifted off my shoulder."

— PCC-SNS service user

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To strengthen coordination and shared understanding across the palliative care volunteering system, Palliative Care Volunteering SA piloted a two-day study tour bringing together regional volunteer coordinators, metropolitan services, and sector partners.

The tour combined a masterclass with site visits to four metropolitan palliative care services. This design enabled participants to see how different volunteering models operate in practice. All regional participants reported that the tour improved their understanding of palliative care volunteering roles and models. Site visits were identified as the most valuable component, with participants noting the benefit of seeing how services differ depending on local context and resources.

The tour also created space for direct engagement between regional and metropolitan coordinators. Participants described the opportunity to share experiences, compare approaches, and build relationships across services. This helped to develop a more connected understanding of how volunteering is delivered across the system.

Alongside increased understanding, participants reported greater confidence in supporting volunteers in palliative care contexts. This learning translated into action, with participants identifying practical next steps such as reconnecting with local palliative care teams, introducing new volunteer roles, and sharing insights within their organisations.

"I feel that I now have a better understanding of how to support my volunteers when they begin their palliative care roles."

— Study tour participant

The study tour also highlighted areas where the system is less developed. In particular, participants consistently identified a gap in training, noting that while coordinators are able to recruit and manage volunteers, they often lack the resources to prepare them for the specific demands of palliative care. As one participant reflected, “they need a lot of training… it’s not like an admin volunteer role.”

In response, the service has begun developing more structured and accessible training approaches, including online modules. This reflects a shift toward not only connecting services, but supporting capability across the system.

Late in the pilot, the HELP app team was connected with Pangula Mannamurna, a new Aboriginal health service serving communities across a large region of southern South Australia, from Keith to Mount Gambier, without a dedicated palliative care unit.

In response to feedback that digital tools present a significant barrier for many of the communities they work with, the HELP app team co-created a paper-based version of their network-centred care resource in partnership with the health service. The resulting resource, which credits both Palliative Care Connect and Pangula Mannamurna, is designed to be nationally applicable and provides a more accessible alternative for communities with limited digital access. It represents a tangible legacy outcome of the pilot, particularly in a region that has historically had limited access to palliative care support.

Early system-wide impact

PCC aimed, over time, to help the wider system work more smoothly. Change at that level was not expected within a pilot, and this evaluation does not claim it. What it found instead were early, concrete examples – isolated rather than widespread – that show where PCC was beginning to shape how the system works.

Learnings and recommendations

What the evaluation found, and what it recommends. Select a heading to explore.

PCC filled a gap not addressed elsewhere in the system, providing navigation and psychosocial support that individuals, families and clinicians are otherwise left to manage during diagnosis, deterioration, and bereavement.
The model achieved high reach and sustained use, with steady growth over the pilot period driven by referrals and establishing relationships.
Impact was strongest at the individual and family level, with consistent improvements in understanding, confidence, emotional containment, and ability to access appropriate services.
User experience and satisfaction were consistently high, with people describing PCC support as clear, knowledgeable, compassionate and available when it is most needed.
PCC navigation worked because it is relational, trusted and time-limited, rather than transactional or ongoing case management. Trust is the primary mechanism that enables disclosure, engagement, and informed decision making.
The Palliative Care Connect Aboriginal Navigation Service was effective by operating with cultural safety, sustained presence and relationship-first practice.
Early system-level contributions were emerging, including improved care coordination, clearer referral pathways, and reduced pressure on general practice, aged care and acute services.

The value of what PCC has built

Over three years, PCC has built relational capital that is now one element of how different parts of the system work. It has built trust with people in the hardest moments of their lives, with clinicians who have learned when and how to refer, and with Aboriginal communities where those relationships took years to form.

This kind of trust cannot be rebuilt quickly.

For the person who calls PCC in the middle of a crisis, none of the system complexity is what matters. What matters is that someone answered, understood the situation, and helped carry the weight. PCC has been that for thousands of people over three years. It is worth asking who does that if it stops.

Resources

This interactive report was produced by Clear Horizon Consulting for SA Health, End-of-Life Care team.

Palliative Care Connect

PCC at a glance

About the evaluation

Developmental evaluation

Pilot evaluation

What Palliative Care Connect delivered

Reach and access

How people connected with PCC

Who contacted the service

How did users hear of PCC?

Digital platforms provided alternate access points

PCC Website

Palliative Care Volunteering South Australia

HELP App

Metropolitan vs non-metropolitan reach by service

PCC episodes of support over time

Building referral pathways: the Bereavement Navigation Service

Quality and trust

Service user satisfaction

Outcomes for people

People access the services and supports they need

People have the information they need

People are connected and less alone

Early system-wide impact

Addressing bereavement support gaps to relieve pressure on primary care

Enabling timely discharge home at end of life

Reducing pressure on specialist palliative care through better referral pathways

Enhancing aged care capacity through flexible psychosocial navigation support

Learnings and recommendations

The value of what PCC has built

Resources